Palliative Care for Infants, Children, and Adolescents


Book Description

There are few things requiring more expertise, delicacy, and compassion than caring for an infant, child, or young adult with a life-limiting condition. Written by leading researchers, clinicians from relevant disciplines, family members, and advocates, this practical guide provides professionals involved in pediatric palliative and end-of-life care with comprehensive information in a single volume. Thoroughly updated and expanded, this edition includes chapters addressing the unique challenges facing children with HIV/AIDS and their families, care in home and ICU settings, difficult decision-making processes, and the importance of communication with the child and family, as well as completely new chapters on spiritual dimensions of care and educational and advocacy initiatives. Intended for primary care physicians, pediatric practitioners and specialists, home care and hospice personnel, pastoral counselors, and affected families, the book includes useful resource and reference material and practical, hands-on tips. With contributions from an international group of expert educators, clinicians, and parents, this book takes a truly interdisciplinary approach to pediatric palliative care, presenting best practices, clear instruction, and the latest information and research for anyone involved in pediatric palliative and end-of-life care.




Pediatric Palliative Care


Book Description

Pediatric palliative care is a field of significant growth as health care systems recognize the benefits of palliative care in areas such as neonatal intensive care, pediatric ICU, and chronic pediatric illnesses. Pediatric Palliative Care, the fourth volume in the HPNA Palliative Nursing Manuals series, highlights key issues related to the field. Chapters address pediatric hospice, symptom management, pediatric pain, the neonatal intensive care unit, transitioning goals of care between the emergency department and intensive care unit, and grief and bereavement in pediatric palliative care. The content of the concise, clinically focused volumes in the HPNA Palliative Nursing Manuals series is one resource for nurses preparing for specialty certification exams and provides a quick-reference in daily practice. Plentiful tables and patient teaching points make these volumes useful resources for nurses.




Supporting the Child and the Family in Paediatric Palliative Care


Book Description

Supporting the Child and the Family in Paediatric Palliative Care provides a comprehensive overview of good practice in caring for terminally-ill children, young people and their families. Drawing from extensive personal experiences of working in paediatric palliative care, the author provides guidance on issues including symptom management and pain relief; cultural, religious and spiritual aspects of care; and the role of education for life-limited children. Addressing the importance of individual needs, the book looks at emotional, social and cognitive support at different stages of the illness, how parents and professionals can respond to children's own questions about death, and the impact of life-limiting illness on the whole family - including grandparents and siblings. The material offers helpful suggestions on how to support families in making informed choices during distressing periods, such as where their child will die and how to prepare for the funeral. This book is a practical and invaluable tool for nurses, paediatricians, hospice care staff, bereavement counsellors and all those caring for life-limited children.




Oxford Textbook of Palliative Care for Children


Book Description

Comprehensive in scope and definitive in authority, this second edition has been thoroughly updated to cover new practices, current epidemiological data and the evolving models that support the delivery of palliative medicine to children. This book is an essential resource for anyone who works with children worldwide.




Dying in America


Book Description

For patients and their loved ones, no care decisions are more profound than those made near the end of life. Unfortunately, the experience of dying in the United States is often characterized by fragmented care, inadequate treatment of distressing symptoms, frequent transitions among care settings, and enormous care responsibilities for families. According to this report, the current health care system of rendering more intensive services than are necessary and desired by patients, and the lack of coordination among programs increases risks to patients and creates avoidable burdens on them and their families. Dying in America is a study of the current state of health care for persons of all ages who are nearing the end of life. Death is not a strictly medical event. Ideally, health care for those nearing the end of life harmonizes with social, psychological, and spiritual support. All people with advanced illnesses who may be approaching the end of life are entitled to access to high-quality, compassionate, evidence-based care, consistent with their wishes. Dying in America evaluates strategies to integrate care into a person- and family-centered, team-based framework, and makes recommendations to create a system that coordinates care and supports and respects the choices of patients and their families. The findings and recommendations of this report will address the needs of patients and their families and assist policy makers, clinicians and their educational and credentialing bodies, leaders of health care delivery and financing organizations, researchers, public and private funders, religious and community leaders, advocates of better care, journalists, and the public to provide the best care possible for people nearing the end of life.




Children’s Palliative Care: An International Case-Based Manual


Book Description

This manual enables individuals working in children’s palliative care (CPC) globally to learn through engaging real-world cases. The aim is to provide a clinical case-based resource that is globally relevant and accessible to those working in CPC. Drawing on case histories from around the world that reflect key issues and elements of CPC, it provides a practical approach grounded in experience. It addresses multidisciplinary care in the management of children and their families; discusses cases from an international perspective, and shares examples from a variety of countries, utilising cases across a range of ages and conditions, demonstrating holistic care. It represents the first case-based manual on global CPC and is endorsed and promoted by the International Children’s Palliative Care Network (ICPCN). Children’s palliative care is a rapidly developing field, both in the UK and internationally. The provision of CPC varies considerably, with provision often being insufficient, and over 65% of countries having no recognised CPC service provision whatsoever. As such, while there are an estimated 21.6 million children who require palliative care, in many areas of the world, CPC is poor or non-existent, and children are treated like little adults without their distinctive needs being recognised or understood. There is also a dearth of literature on CPC, hence this clinical case-based manual fills a gap in the market, and is aimed at a global audience, making it a unique text in the field.




Interdisciplinary Pediatric Palliative Care


Book Description

Interdisciplinary Pediatric Palliative Care provides a uniquely integrated, comprehensive resource about palliative care for seriously ill children and their families. The field of palliative care is based on the fundamental principle that an interdisciplinary team is optimal in caring for patients and their families throughout the illness trajectory. The text integrates themes including goals of care, discipline-specific roles, cultural and spiritual considerations, evidence-based outcomes, and far more. It emphasizes the value of words and high-quality communication in palliative care. Importantly, content acknowledges challenging periods between team members, and how those can ultimately benefit team, patient, and family care outcomes. Each chapter includes the perspective of the family of a seriously ill child in the form of a vignette to promote care team understanding of this crucial perspective. This second edition is founded on a wealth of evidence that reflects the innovations in pediatric palliative care science over the past 10 years, including initiatives in clinical care, research, and education. Interdisciplinary Pediatric Palliative Care is appropriate for all pediatric palliative clinicians (PPC), including physicians, nurses, psychosocial clinicians, chaplains, and many others. All subspecialists who deliver care to seriously ill children, will find this book a must-have for their work. Advance Praise for Interdisciplinary Pediatric Palliative Care, Second Edition "This new edition is as much a testament to pediatric palliative care's remarkable evolution as a field as it is a quintessential playbook for providing the high-quality holistic and compassionate care that families with seriously ill children desperately want. Every page thoughtfully weaves together how interprofessional teams can contribute collaboratively to learning about and supporting the preferences, needs and priorities of the precious patients and families in their circle of care. It is a must read for all practitioners to enhance their palliative care understanding, appreciation and ability as a foundation for optimizing quality of life in practice." - Rebecca Kirch, JD, Executive Vice President of Policy and Programs, National Patient Advocate Foundation "This book offers a truly contemporary and comprehensive view of the entire field of pediatric palliative care. The focus on social determinants of health, cultural humility, and disparities in care could not be timelier, and the section highlighting conflict and conflict resolution should be required reading. The continued and purposeful inclusion of interdisciplinary clinicians in producing each chapter models the palliative care team itself-an approach in which all voices are necessary as we seek to provide the most compassionate care possible." - Rachel Thienprayoon, MD, MSCS, FAAP, FAAHPM, Associate Professor of Anesthesia, Medical Director, StarShine Hospice and Palliative Care, Cincinnati Children's Hospital Medical Center




Dying Well


Book Description

From Ira Byock, prominent palliative care physician and expert in end of life decisions, a lesson in Dying Well. Nobody should have to die in pain. Nobody should have to die alone. This is Ira Byock's dream, and he is dedicating his life to making it come true. Dying Well brings us to the homes and bedsides of families with whom Dr. Byock has worked, telling stories of love and reconciliation in the face of tragedy, pain, medical drama, and conflict. Through the true stories of patients, he shows us that a lot of important emotional work can be accomplished in the final months, weeks, and even days of life. It is a companion for families, showing them how to deal with doctors, how to talk to loved ones—and how to make the end of life as meaningful and enriching as the beginning. Ira Byock is also the author of The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life.




Scarlet Says Good-Bye


Book Description

When a child has to say good-bye to someone she loves, the process can be easier with a friend at her side. Join Scarlet, her best friend Elby, and the critter gang as they say good-bye to someone Scarlet loves. Follow them as they learn about hospice services and do some activities along the way. This beautifully illustrated, hardcover edition will become a treasured family keepsake. Use it to remember your child's thoughts and save it to share years later. Includes a story about Scarlet, activities, journal page, and place to write a letter to a loved one. This book won a ClearMark Award and the Mom's Choice Awards Gold.




Improving Palliative Care for Cancer


Book Description

In our society's aggressive pursuit of cures for cancer, we have neglected symptom control and comfort care. Less than one percent of the National Cancer Institute's budget is spent on any aspect of palliative care research or education, despite the half million people who die of cancer each year and the larger number living with cancer and its symptoms. Improving Palliative Care for Cancer examines the barriersâ€"scientific, policy, and socialâ€"that keep those in need from getting good palliative care. It goes on to recommend public- and private-sector actions that would lead to the development of more effective palliative interventions; better information about currently used interventions; and greater knowledge about, and access to, palliative care for all those with cancer who would benefit from it.